My son, Ethan, was diagnosed with ATRT brain cancer in November 2022. This is a very rare and aggressive type of brain cancer. Ethan was a happy and seemingly healthy 2.5-year-old who was meeting all of his milestones. Suddenly, during the first week of November 2022, he started having trouble walking. He was having trouble with his balance and within a few days was starting to crawl again. This was the only symptom he had. We took him to his pediatrician who referred us for an MRI. To our shock and devastation, the MRI showed a large tumor in his cerebellum and he had hydrocephalus from the fluid buildup in his brain. Ethan was immediately admitted to the hospital and we were emergency transported in an ambulance from the hospital at Mizzou to St. Louis Children’s Hospital. After a biopsy of the tumor, we received the devastating diagnosis of ATRT brain cancer.
We spent 130 nights in the hospital during Ethan’s treatment. Ethan had his tumor resection surgery and multiple rounds of brutal chemotherapy including a stem cell transplant.
Ethan was treated at St. Louis Children’s Hospital which is about 2 hours away from where we live. During this time my husband and I switched off being in the hospital with Ethan or being home with our older son, Jonah, who is 6 years old. Our family was separated during this time for about 5 months. This was a very difficult and challenging time.
Ethan’s cancer diagnosis has changed so much. We miss our life before his diagnosis and we never thought anything like this could happen to our family.
Ethan’s diagnosis, treatment, and spending so many nights in the hospital were very traumatic for our whole family. Right now we are focusing on cherishing the time we have together and helping Ethan heal from his treatment. We also try to maintain a sense of normalcy for our older son, Jonah.
Ethan recently had his routine MRI on October 18th, 2023 and he had clear scans! His type of cancer is very aggressive and there is a high chance of relapse, so this is amazing news!
Beckett was diagnosed with AT/RT in March of 2023. He was dizzy when he started running around and had random vomiting.
He has had two brain surgeries and 30 rounds of radiation and we are on 3/5 cycles of chemo. The hardest struggle is being away from family. Beckett has a brother and two sisters stuck in Michigan away from us while he receives treatment at St. Jude.
Everything had changed. Our address, we have no income, our children’s lives, our lives, but this has shown us love in the world. Love from family, friends, and even complete strangers.
McKenzie is quite the charming yet fierce little lady who enjoys being independent. Her love is infectious. She has two much older siblings so she is the center of attention in our home and she knows it.
McKenzie was diagnosed with an Atypical Teratoid Rhabdoid Tumor at the age of 21 months old on February 10th 2021. She was ok one day & completely not the next. She always had some gait issues but was also just learning how to walk so we didn’t think much about it until one day she woke up very lethargic & uncomfortable.
She had three induction chemo cycles, three high dose chemo cycles (with stem cell rescue), & 30+ proton beam radiation sessions.
McKenzie still has some mild to moderate gait issues. I’m also a single mom of three making the budget tight. Saying that cancer has changed our lives would be an extreme understatement.
Still, McKenzie has overcome so many obstacles to be where she is today.
Kennedy is fun, stubborn, afraid of missing out, and loves his family. He also loves hot wheels, music, and golf.
Kennedy was diagnosed with ATRT, a brain tumor, in August 2021. Prior to his diagnosis, he was vomiting and had head torticollis.
He has received two rounds of low-dose chemo, three rounds of high-dose chemo, three stem cell transplants, and 28 rounds of radiation to the brain. He requires a feeding tube (G-tube dependent), has problems with his balance, facial paralysis, sensitivity to sunlight due to chemo, and vision palsy.
It’s hard balancing brain cancer and life along with raising your other child, maintaining a relationship with your spouse, and the unknown of your child’s prognosis.
Kennedy turned two in October and shows courage and strength in his own way. He has brought an amazing spirit to everyone he has ever met.
Huxley is a very active happy boy. He loves being outside and going on walks with his brothers and sister. He loves music and will sing along to almost anything. However, his favorites are The Wheels on The Bus and You Are My Sunshine. He also loves to cuddle and watch his show Ladybug and Cat Noir.
Huxley was diagnosed with Atypical Teratoid Rhabdoid Tumor (ATRT) in July of 2021. He also has Phelan Mcdermid syndrome; one of the symptoms of this disability is trouble with balancing, however, around Huxley’s 3rd birthday his balance got worse along with his eyesight and ability to communicate. Since he does have Phelan Mcdermid syndrome, it puts him at risk for NF2 tumors so he gets an MRI every 2 years and on one of the routine MRIs we found a mass. We repeated the MRI six weeks later to see if the mass had grown and it had. Huxley had surgery to remove the tumor and then 2 weeks later we got our diagnosis of ATRT.
Huxley’s treatment plan is 2 rounds of induction chemotherapy and 3 rounds of high-dose chemo with stem cell rescue. He will then have 6 weeks of radiation and possibly a year of maintenance therapy.
Cancer has changed our life significantly. We have had to go down to one income and Huxley has three siblings that miss him terribly when he has to be in the hospital.
Gianna was diagnosed with AT/RT in December of 2018,. She underwent 10 months of treatment. She did regular chemo, high dose chemo with BMT, and finally radiation. We were treated at 3 different hospitals. We were at Valley Children’s first, then UCSF Benioff, and finally at Radys in San Diego. She is currently stable and will be going on 2 years without treatment.
Even in the darkest times, she has made me smile and tell me she’s fine. She has been a fighter!
